Cystic Fibrosis Q&A (Part 1)
"What do you struggle with most?"
Knowing that my life will be a lot shorter than my friends, they all know this though I'm not sure it's truly sunk in for them that I will likely die young as I've been fairly healthy since I've known most of them. It kind of scares me to have these relationships because I don't want too many people to be there when I die. That's scary.
"What do you wish everyone knew about CF?"
That it's not just a cough. I'm tired all the time and I have no energy some days. Hospital clinics are the worst. People always assume that clinic isn't bad but I've always hated it.
"What misconceptions do people have about CF?"
That it's not very serious. This is usually because they've never heard of it.
"What causes CF?"
CF is caused by two people that are both carriers of a CF faulty gene having a child, there's a 1 in 4 chance that the child will have CF, a 2 in 4 chance of the child being a carrier and a 1 in 4 chance of them being completely unaffected.
"How is it treated?"
CF is treated with medications and physio, although it's different for each. Personally I take a few different tablets during the day, two nebulised medications and then I try and do some sort of physio, like exercise, percussion, or simply watching tv whilst sat on an exercise ball to try and get my lungs clear.
"What is something positive about having CF?"
The only positive that I can think of is that I've made so many friends, many of whom have more similar interests and hobbies to me than my friends in real life do.
"What is the worst thing about having friends with CF?"
That I can't be near them. In America they have the six feet apart rule (the film Five Feet Apart is somewhat based on this, I've previously written posts about the film if you'd like to check those out!) but in the UK, or at least in my hospital the doctors just say to stay completely away from eachother, not that many of the CFers I know listen though.
"Can Type One Diabetes be linked with CF?"
I'm not sure. A lot of people with CF have Cystic Fibrosis Related Diabetes (CFRD) and although CFRD is what's on my hospital notes it's pretty much always been reffered to as Type One. My nurse always said it was more T1D than CFRD so that's what we went with. Though I'm not sure if there is any links there!
"How many tablets does the average person with CF take? What are they for?"
Personally I take eight different tablets multiple times a day. Some are for fighting bacteria, one is for my liver, I'm on three different vitamin D tablets (7 a day!) because I have a vitamin D deficiancy, ones for my osteoporosis.
"I haven't watched Five Feet Apart, is it an accurate representation of CF?"
Personally I think so! You should definitely watch the film, I loved it. I have a few blog posts about FFA on my blog already, check out the one from this month for a more in depth answer!
Thanks to everyone who sent me questions. I occasionally ask for questions on my Instagram story so be sure to follow me so that you can ask questions in my next Q&A!
Shannon x
Knowing that my life will be a lot shorter than my friends, they all know this though I'm not sure it's truly sunk in for them that I will likely die young as I've been fairly healthy since I've known most of them. It kind of scares me to have these relationships because I don't want too many people to be there when I die. That's scary.
"What do you wish everyone knew about CF?"
That it's not just a cough. I'm tired all the time and I have no energy some days. Hospital clinics are the worst. People always assume that clinic isn't bad but I've always hated it.
"What misconceptions do people have about CF?"
That it's not very serious. This is usually because they've never heard of it.
"What causes CF?"
CF is caused by two people that are both carriers of a CF faulty gene having a child, there's a 1 in 4 chance that the child will have CF, a 2 in 4 chance of the child being a carrier and a 1 in 4 chance of them being completely unaffected.
"How is it treated?"
CF is treated with medications and physio, although it's different for each. Personally I take a few different tablets during the day, two nebulised medications and then I try and do some sort of physio, like exercise, percussion, or simply watching tv whilst sat on an exercise ball to try and get my lungs clear.
"What is something positive about having CF?"
The only positive that I can think of is that I've made so many friends, many of whom have more similar interests and hobbies to me than my friends in real life do.
"What is the worst thing about having friends with CF?"
That I can't be near them. In America they have the six feet apart rule (the film Five Feet Apart is somewhat based on this, I've previously written posts about the film if you'd like to check those out!) but in the UK, or at least in my hospital the doctors just say to stay completely away from eachother, not that many of the CFers I know listen though.
"Can Type One Diabetes be linked with CF?"
I'm not sure. A lot of people with CF have Cystic Fibrosis Related Diabetes (CFRD) and although CFRD is what's on my hospital notes it's pretty much always been reffered to as Type One. My nurse always said it was more T1D than CFRD so that's what we went with. Though I'm not sure if there is any links there!
"How many tablets does the average person with CF take? What are they for?"
Personally I take eight different tablets multiple times a day. Some are for fighting bacteria, one is for my liver, I'm on three different vitamin D tablets (7 a day!) because I have a vitamin D deficiancy, ones for my osteoporosis.
"I haven't watched Five Feet Apart, is it an accurate representation of CF?"
Personally I think so! You should definitely watch the film, I loved it. I have a few blog posts about FFA on my blog already, check out the one from this month for a more in depth answer!
Thanks to everyone who sent me questions. I occasionally ask for questions on my Instagram story so be sure to follow me so that you can ask questions in my next Q&A!
Shannon x
Comments
Post a Comment